I’m ready to give up on life because nobody is taking this seriously

[tiredandgrumpyy]

I am sorry to post again. No pictures this time, I promise.

Most of those reading will know the story, heavy rectal bleeding, prolapse and abdominal pain.

Admitted last Tuesday, discharged last Friday morning. Admitted again Saturday night.

The Sunday morning I saw a surgeon on the ward and they were really dismissive of me and I ended up sobbing. They discharged me after telling me they would fast track me to the colorectal surgeons because “no one will see you now, it’s a Sunday, do you expect a colorectal surgeon to see you now? what do you want me to do, call them up and tell them they need to get to work?” when I said I don’t feel well enough to go home he said “stay in then, I don’t know what you want me to do about it” rolling his eyes at his team, and walked off.

I stayed at home yesterday despite bleeding all day. Last night at around 2am, I woke up to go to the toilet again as it’s been non stop diarrhoea, and became so dizzy I collapsed and fell face first on the hard corner of the sofa, my nose and head is bruised.

Today has been hell. I have been on the toilet non stop, this morning it was just blood which wouldn’t stop even after going to the toilet. I don’t even know how many times I’ve been to the toilet with diarrhoea too.

I called the number for the colorectal department today and the secretary has said I’ve been referred for an appointment but it’s marked as ‘non urgent’ so it’ll be at least a 6-12 month wait to be seen. She hung up the phone when I got upset.

At 6:30pm I went to the toilet and I have bled for one hour straight. It’s dark, thick blood. I’d estimate around a mug - 1.5 of just blood, which continued in my underwear for 15 minutes after.

Today in total I would estimate about 2-2.5 mugs of blood.

I became so dizzy and couldn’t walk properly without being all over the place.

My partner has taken me to A&E, I was seen straight away and I’m waiting for bloods and I’m on a trolley. My blood pressure was high, not low, my heart rate was 125 but oxygen levels fine. Tummy is cramping and head really hurting.

Im so scared to be here. I have no one here with me as usual. My mum is very dismissive so wouldn’t come with me and my partner is at home with our DS.

I feel like a nuisance and I already want to cry because they must be sick of me by now. I don’t want to be seen as that ‘hypochondriac’ but it’s my only option because my GP always advises it’s A&E I need and not them.

Over the last two months I have lost £6,000 in monthly recurring revenue and I spend my life on the sofa or on the toilet. I am becoming so heavily depressed because I need help.

I don’t have friends nearby because I’ve recently moved. I have no one to be here to advocate for me and I become so nervous now that I struggle to talk without blubbering.

Please, I need help tonight, if anyone has any wide words on how I can best advocate myself, how I get them to listen, what I can say to make them listen, I would so appreciate it.

I am no longer coping and am at a point where I no longer want to be here.

I’m so sorry to post again. At this point it’s one of my only outlets and I don’t know where else to turn.

Really sorry OP that you’re in this awful situation. I really hope you get some help soon. I do think as previously suggested it would be beneficial to go to A&E in another hospital

💐💐💐💐💐

If you say so. It couldn’t really be worse than wherever she is now.

I used to be under St Marks which was amazing after my operations. Best colorectal surgeons in the country. If tonight fails I might ask my GP if I can see my old consultant there. Just want my partner to hurry up before I’m seen because I just overheard a surgeon say ‘but she was discharged 2 days ago’ and the nurse confirmed they were talking about me so I’m not expecting much.

Being discharged and ending up back in hospital makes it clear you need interventions now. If anyone tries to discharge you point out this is the third time you've presented this week.
That you collapsed and injured yourself after being sent home with the same symptoms you went in with.
And clearly state you feel too ill to go home.
Ask for the details of Pals and how to make a formal complaint

https://www.bsg.org.uk/clinical-resource/diagnosis-and-management-of-acute-lower-gastrointestinal-bleeding-guidelines-from-the-british-society-of-gastroenterology/

I haven't read this just saw it and it's relevant

I’ve just been thinking about you today wondering how you are. Appalled that you’re no further forward. I hope you get sorted but would definitely be looking to complain about that consultant.

I'm in East Sussex, OP. If you are too, it may be worth contacting East Sussex Healthwatch, 0333 101 4007. They can support you with advocacy, or put you in touch with someone who can advocate for you. The phoneline is only open 10.00 till 2.00.

I can't believe they're not doing anything.

I've been thinking about you too, and wondering how you were getting on. So sorry to hear what a horrific situation you find yourself in. It sounds like a malfunctioning team - I hope someone there has the wit to treat you with compassion and skill.

Does she really want to be treated in this hospital though? I wouldn’t want to stay in there if there is any alternative.

This sounds very much like ulcerative colitis. My mum had it for a long time, multiple trips to the hospital via ambulance, agonising pain and bleeding that went undiagnosed whilst she was asked to keep food diaries etc. after quite sometime she had a series of surgeries removing parts of her intestine and colon, now having a permanent stoma. It was literally all that would stop it. Despite all she went through she has been comfortable for about 10 years now and no issues. Don't mean it to frighten you but it does sound like similar symptoms. Once diagnosed she was treated and supported well (mentally and physically). I'm so sorry you are being treated like this.

Well holy fuck you know how to kick the crap out of someone when they are down.
@OP, sit on the bed and bleed next time it happens, absolutely horrible but they need to see.

Its a common misconception that going to hospital by ambulance will get you to the front of the queue. It won't. You get triaged & treated for your symptoms not your mode of transport

The OP said in her first post that she's at A&E at the moment

It’s bollocks anyway, she’s misunderstood the thread and not read the previous one.

Hope your DP gets there in time to advocate for you. If not - be pushy, get everything in writing and demand PALS details.

I think others have got a bit confused, as per the info she has given the OP does have a UC diagnosis, has had it for many years and has had previous colorectal surgeries, has been under St Marks etc. Have I got that right OP? And this is a flare of her UC but the gastro or surgical teams haven't offered any treatments yet that have helped?

Interesting that you’ve also had experience of the direness of Worthing.

Yes OP has diagnosed UC, she’s having a bad flare and this hospital doesn’t know how to deal with it.

Do you have any contact details for your gastro team OP? Do you have a CNS or gastroenterologist you can contact? They would usually be the team that would support you during a flare and liaise with the surgeons if needed. Really hope you get some help soon.

OP, are you person who posted more details in another thread -- your underlying diagnosis is UC, I think, is that right? And you have a rectal stump from a previous subtotal colectomy which has been repaired with an end-to-end anastomosis from your small bowel?

If so, then I'd suspect you have recurrence of the UC in your rectal stump. I'm sorry and I guess you already know this.

I used to be a GP, not a GI surgeon or medical gastroent. But I remember the sickest person I've ever seen with UC was a young woman who had not had a previous diagnosis but was bleeding like you, had been for a month, had been sent home from hospital etc etc and looked, I kid you not, as though she was close to death. I got her admitted under the medics, not the surgeons, and they were able to stabilise (and diagnose!) her UC. (I don't know what became of her longer term).

Some places refer all rectal bleeding through the surgeons and it may be that where you are does that, but I'm wondering if you would be better going under the medics at the moment, in the hope that they can stabilise the situation without any emergency cutting. Can you ask them to refer to the oncall gastroenterology team? After all, IIRC you have the diagnosis, and that diagnosis would normally be dealt with by them --

All the best and positivity as best as possible.

Fucking hell, how absolutely miserable!! You poor thing. No advice, just sending heaps of vibes.

Absolutely rubbish 😡
The ambulance service has a traffic light system they stick to, if they put your symptoms in their system, it comes up as either red, amber or green, if your symptoms come back as green, you don’t get taken to hospital, amber is at their discretion and red, you get taken to hospital, and for it to be red, it’s got to be pretty serious!!

Your treatment by drs and your dm sounds appalling.
I’m sorry for all that you’re going through. Get all the help from pals that you can & tell someone at the hospital that you’re feeling suicidal. Hopefully someone will listen.

I’m sorry OP, I read your previous thread and have been thinking about you too.

There is some really good advice on the thread already. Have you also tried PALS? It is unthinkable that they would allow you to leave so please don’t allow them to kick you out. You’ve really collapsed at home so there is clearly a risk this could happen again.

So sorry to read that you are being treated like this. Stay firm and refuse to leave until you get the treatment you need. Fingers crossed you are seen by somebody competent and who still has their empathy intact. When you're better, complain vociferously to PALS about the way you have been treated.